Saturday, 4 October 2014

Crohn's Disease - DIARY - Let's Talk BAM, amongst other things

Started writing this whilst waiting in East Surrey A and E for a bed in the Acute Medical Unit. No, not for me this time, but for my mother-in-law who had a fall. Not what we had planned to do that evening. Brings back a lot of memories.....

...and something else that didn't go to plan...Saturday 27th September 2014 - Today I did something I can't remember doing before - setting off on a journey and then having to turn back. We got as far as the M25 when I suddenly felt the need to visit the bathroom and at the same time a pain started in my lower left back. The pain got worse and worse. We made it to the new services, just beyond Leatherhead, and by now I was starting to get scared. Off to the bathroom. Didn't need to go but pain not easing. Back to the car hoping that sitting down again the pain might ease slightly but no, started spreading up the left side of my back. Decided there was no point in sitting there hoping for an improvement so we set off for home. I really didn't think I would make it. Driving the last couple of miles the pain was becoming unbearable but we did make it.

I immediately took a couple of paracetamol and filled a hot water bottle. I lay on the sofa with the hot water bottle on my back and over the space of the next couple of hours the pain melted away and didn't return. Could it have been a small kidney stone? By Sunday I was digging in the garden, planting shrubs in a new bed.

....and now the subject I had intended to start with - BAM. If you read my last post I have been diagnosed with severe Bile Acid Malabsorption. It shouldn't be a surprise because it is very common in patients who have had their terminal ileum removed. Can it be treated? Yes - using drugs such as Questran, and they have the added advantage of reducing cholesterol, but some patients struggle with them. Before making the decision I wanted to see my GI consultant.

Didn't feel like the last day of September, more like mid-summer. The sun was shining and the walk (3 km) from work down to Westminster was enjoyable and there were fewer tourists to dodge than usual.

St.Thomas' viewed from Hungerford Bridge

Haven't had an appointment this late in the day so will be interesting to see when I get called in. There's the usual false hope of seeing your name appear on the board but only to be weighed. That was at 4:00pm. I asked the nurse who was weighing me to put a note on the front of my file saying that I wanted to see my usual consultant. I was prepared for a long wait and just gone 5:00pm my name appeared again. Off to the consulting room only to be greeted by a new doctor.

I explained that for continuity I had asked to see my usual doctor. He understood and I went back into the waiting area which, by now, had only a few occupants. I prepared for an even longer wait but after just 5 minutes my name appeared again and this time it was for the right consultant. After the initial pleasantries I produced my list and we worked our way through it.

The List

1) Main reason for the visit - decide whether to change medication to deal with the BAM. Some patients struggle with the standard BAM drugs. There is a new one with less side effects but GP's don't like prescribing it as it is an order of magnitude more costly.

"What about the advantage of lowering cholesterol?"
"Good point, do you have high cholesterol?"
"No."
"Well then there's no advantage then."

"How many Loperamide capsules are you taking a day?"
"Two or three."
"That's very low. Some patients are on 20 per day. If you were to change to BAM medication the manufacturers recommend not taking any other medication within 4 hours so you would need to change your tablet regime......."

Conclusion - we'll note that you have BAM but for now let's manage it with the existing Loperamide dosage. That suits me fine.

2) I explained about the pain last Saturday. I can imagine another doctor saying "we'll keep an eye on that..." What I like about my consultant is there's no procrastination."We'll get that checked out" and with that he filled in a request for an ultrasound scan.

3) I had noticed that the opening paragraph of follow-up letters had some errors in dates and the description of the surgery I had undergone. He dictated an update there and then.

4) This was just a note to remind me I needed to book my annual upper GI endoscopy for early November.

5) I had recently been sent a date in January for a routine gastro appointment. I asked if it would be a good idea to get a calprotectin done in time to review the results. He filled out a test request form for taking to pathology with the sample and recalled that my last test results had gone missing until I had done some chasing around. I explained the power of SoMe and finding the "Contact our Chief Executive" page on the labs website. He sounded impressed and we then had a brief discussion on the very supportive IBD communities that have sprung up..

I asked when the next colonoscopy was due as I know there is a recommended frequency for Crohn's sufferers due to the increased risk of bowel cancer. He asked me when my last one was. To my horror I gave him a date, 20th December 2012, and was spot on. I shouldn't keep this information in my head. We agreed that we would review the question at the January appointment, after the Calprotectin results were known.

6) Bloating. I had asked my wife is she had any questions that needed answering. "Yes. Why do you look like you are pregnant?" Ever since my ileostomy in October 2010 I had noticed my upper torso had taken on a different profile. A bloated profile!

He replied that all medical students are taught that bloating could be caused by the five Fs:

Fat (obesity)

Faeces (constipation)

Fetus (pregnancy)

Flatus (gastrointestinal wind)

Fluid (ascites)

Some we can discount. The most likely causes are wind or fluid. He told me to ask the ultrasound radiographer to also look a little higher than my kidneys to see if there was any fluid showing up.

7) I've been complaining about an ache around my anastomosis (re-join) for some time now. I'd noticed recently that it seemed to be worst with a full gut. He said that would make sense as there could be some distension of scar tissue around the surgery. I pointed out that he had not seen any scar tissue when carrying out a colonoscopy to which he replied that it would be on the outside of the gut and the only way to see it would be a laparoscopy. Best leave well alone then.

Consultation over.

By now it was getting close to six o'clock. I walked back over Westminster Bridge on the way to Victoria Station. The quality of the setting sunlight on the Houses of Parliament was superb so rather than hurry to catch the train I took my time just marveling at the stone carvings.

The Elizabeth Tower housing Big Ben

The Gothic Revival architecture of the Houses of Parliament

Wednesday 1st October 2014 - I received a phonecall from St.Thomas' asking if I could come in for the ultrasound scan on Friday week. I usually try and avoid London on a Friday but....